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soficrow
Unregistered User
(12/18/02 12:23 pm)
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RE: international org, Canadian org, new website etc
Hi All,

I apologize for disappearing, and for not answering emails.

I have (another) appointment with a vascular surgeon this week, and I’m worried. I have had pain presenting like gall bladder attacks, and sometimes like ulcers or colitis or GERD, with abdominal pain – and I know it’s FMD. It started again about 6 years ago, and now it’s getting much worse. I have that old familiar groin pain on the right side that radiates down to my knee, and flank pain, and up to my shoulder (so my right renal artery stenosis is definitely coming back)… and I often wake up with pain several times a night. My brain periodically goes fuzzy – and I know I’m having TIA’s, undiagnosed of course. …I will deal with it, and I will be fine, but it’s frustrating.

RE: ORGANIZATION

I totally support all efforts to create an organization here. I will stand behind whatever decisions are taken here, by the whole group.

I consider myself a member, and hope I am on the “list.” HOWEVER, I do not wish my name and birth date to be posted on the Internet, or for personal details (like my birth date) to be filed with the organization – this is not wise for anyone. I hope we can find another means to handle membership data, and perhaps NOT collect birth dates with the names. At the same time, I have no reservations about publicizing my name and email address here, and within the group.

I firmly believe that anyone collecting information on behalf of the group, including names and email addresses, is responsible to share that information with the group. Were I to make an approach for information or otherwise, and then discover that my overtures were held in the keeping of one single person, and not available to the group, I would consider that circumstance to be fraudulent.

I have much experience with non-profit and other organizations – and have learned that the best efforts occur when everyone’s affiliations and agendas are on the table. This includes information sharing.

If the group votes in favor of Rich as President, I will support the vote, preferably interim, but full out if that’s the way it goes. My concern here is that FMD is primarily a woman’s disease, most of us here are women, and I question that it may be seen as inappropriate and possibly paternalistic to have a man represent us. On the other hand, I do recognize that most of the women here with the skills, contacts and abilities to do the job probably may not be in a position to take on Presidential responsibilities. …and I do appreciate Rich’s commitment and efforts.

However, if Rich is to be President, it is not at all unreasonable to ask for a bio or CV – for example, where does he work? What is his business and educational background? Etc. If we are to be a fully functioning and democratically representative organization, then our decisions must be informed decisions.

As I have suggested before – I do have some other issues:

BOARD COMPOSITION: While we need medical people on the Board, I am concerned that they all need to be onside for the key issues. The key issues (and positions) I see are that (a) FMD is an ‘overlooked’ pandemic, resulting in part from critical information being spread over numerous specialties without being centralized and evaluated comprehensively, and from a kind of unwritten (paternalistic) policy not to diagnose the disease simply “because nothing can be done about it anyway;” (b) FMD clearly has unrecognized vectors of transmission that need to be studied to address the implications of communicability, and to determine what the vectors are; (c) it is a priority to develop a comprehensive description of the disease, to compile data collected from the various specialties, and to verify its prevalence; and (d) the current “ethical debate” notwithstanding, the use of FMD-diseased kidneys in transplant is irresponsible to both recipients and donors.

CANADIAN ORGANIZATION: I can spearhead a Canadian organization, pull together a Board and get it established along with or shortly after we get this international organization registered. Could all the Canadian members here please contact me, or respond to this post? …or if someone else already has this going, could you please let me know, and I will support you?

PUBLICITY AND COMMUNICATIONS STRATEGY: I believe we have an eminently “marketable” story here – and that is precisely what we must do: we need to “sell” the story in the same way that manufacturers market their wares, and like other diseases get “press” and seek funding. We need a marketing and advertising campaign. I am almost ready to go with this – but we need to coordinate our efforts. I am developing lists – of organizations, mainstream and alternative media, and potentially supportive medical professionals – and have several articles ready for final editing, as well as drafts of letters to politicians, agencies, etc. …Every audience needs a slightly different approach. If anyone would like to work with me on this, please contact me. It would be best if we brainstorm, and agree on a ‘campaign’ and the ‘key selling points.’ NOTE: I have been getting email viruses lately, and will not open attachments.

I also have a website in the works – I do not see it as ‘competitive,’ more as supportive, and with a slightly different thrust than either fmdfaqs or the IRDSN site. The more we have ‘out there’ on FMD, the better for the cause. I intend to organize research information in a particular way, which is different from the approach used on fmdfaqs, and to use the site as a means to centralize and store FMD research, documents and studies. Also, it will be set up to develop a comprehensive picture of FMD from the patient’s perspective (as opposed to the clinical view). …it will be organized so that everyone can contribute – their stories, their own research ‘finds,’ etc. Bofinger’s work is especially important – does anyone have his work on file? I am hoping that between all of us, we can collect everything he has ever written.

Well – looks like I’ve done it again – sorry. I really don’t set out to be long winded. LOL

Thanks again to everyone – for being here, sharing, and working, and just for trying.

Take care,
Lanie

Celeste
Unregistered User
(12/18/02 2:21 pm)
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RE: international org, Canadian org, new website etc
I agree with the greatest portion of your entry here as it refers to security and disclosure of data base information. I have emailed you the "makings" of a data base approached so you can appreciate where we are going with this and need your input. Those emails are not posted here because, in keeping with issues of security, I feel these should not be shared in public. I think you will agree.

As to Rich as Pres. He was nominated by those who attended the Chat of Dec.

This is what I have proposed. That he take the lead as "temporary" Pres for 6 months. By then, we should have a more solid organization and a vote of members can be held. We need a Pres NOW because one is needed to file with NORD. He and his wife Susan have experience with NORD and can not only fascilitate, but expedite this process.

As to the point that he is male. There are males with FMD and family of those with FMD. Take my husband, he does not have FMD, but is as affected by the disease and has spent time creating this site <smile> We have to move beyond sexism, treating others the way we have been (or are) treated will not change "our world" of separatistism. It is the mind I am interested in, not the gender. But I respect your opinion and your thought sharing.

As I read and read your entry I am excited about your communication!

You are thinking the same as many of us, only YOU placed it here! Let us come up with a plan on how to accomplish these very important tasks. The HOW is just as critical as the WHAT.

1. BOARD COMPOSITION -- want to take the lead on this one?????

2. CANADIAN ORGANIZATION -- site administrator, would you link to Canada based on requests or initiative to reach people?

3. PUBLICITY AND COMMUNICATIONS STRATEGY -- Ah, this is the sweatheart of the matter and a favorite. Jocee has taken the lead on this one. However, she is looking for others with similar interests. I totally agree with your assessment and have been telling the "list" the same thing for over a year! This is great. Have posted suggestions under the Chat section on one approach; contact National Council of Women Organizations for one.

4. Organizing stories from a patient perspective -- BETH volunteered for this part but can use your vision in putting it together. Can you help her here?

God, this is great. I had a stroke and half my brain is dead...but the part that works is filled with hope...there are lots of brains working out here <smile>...just imagine the benefits to all of us.

soficrow
Unregistered User
(12/19/02 8:53 am)
Reply
org
Great Celeste - you go gurrl!

I need to focus - pull my work together and get my website up and running.

Once it's up - the research will be centralised - each sub-section will be synopsized, with references... then everyone can use what's there, copy and paste, edit, modify, rewrite etc..... and of course, add to the info base

If you can be patient, I am confident that it will be very useful to everyone

...so in the meantime, I can't get involved in organizing except to raise what I think are pertinent issues and questions

- and you all are doing great! ...so just keep doing!

Thanks, Lanie

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